Oncologist Meeting 26th August 2021

This will be my second meeting with Oncologist this year, and all going well my last for 2021.

But there are twists and turns yet again

Over Four years since my Stem Cell Transplant. The first two years I had to meet the oncologist 4 times each year, year 3 and 4 is twice a year and after this meeting it will drop to once a year. Normally after 5 years you get discharged and classed as Cancer Free, within the 5 years you are classed as Cancer Clear. My oncologist has said the he will most likely never fully discharge me as this particular form of Cancer is extremely rare and needs to be monitored. But he is prepared to class me as Cancer free next year.

Normal blood tests the week before meeting him and had that done on the 18^th of August (they need a week to get some of the results back) only 5 files of blood this time.

However I have been feeling off for the past week. I’m still isolating even after been fully vaccinated. The house is for sale but I rarely meet the people viewing and the auctioneer is extremely careful – mask, gloves and hand wash prior to and after viewing, even down to dumping the used mask and gloves into a double bag. The weather here in Ireland has been extremely bad all month, its going from warm to cold to raining every day. I feel it’s a chest infection that has caught me or a summer cold. Symptoms really started on Thursday 19^th so I called my GP to advice as I basically need to be sure to protect my oncologist.

The GP wanted a Covid test done fast, she placed me on antibiotics, cough bottle and an extra inhaler. That was Friday 20^th about 5 minutes after the call I got a text with an appointment for Saturday 21^st.  I arrived at the test centre and it was very organized, its about a 45 minute drive from the house. On Sunday I got the results as Negative for Covid 19. Good positive news.

And onto Thursday 26^th of August 2021. And I have a list of things to ask the Oncology team. Due to the Stem Cell Transplant in 2017 I need to discuss immune vaccinations, not Covid but things like measles, mumps, tetanus and PCV13. But following a pre call check the medical team decided that I could not attend the meeting as I still had a chest infection and on antibiotics. It was followed by a call to cancel my eye follow up operation on Friday 27^th.

The Oncologist called me anyway just after 4pm on Thursday. And my bloods were perfect. I am now in remission 4 years. But he decided to investigate everything further and organized a meeting for the 23^rd of Sept. I have blood test the week before and scans pre meeting.

The blood test is interesting as it is quiet a new test developed in 2015 called VirScan , This test can tell doctors about a person’s history of prior viral infections, something that may head off more serious diseases in the future. The new blood test, called VirScan, has the potential to detect more than 1,000 different viral strains in the virome, the vast array of viruses that can infect humans. The potential of this test with Covid history should be very interesting. I had the test on the 16^th of Sept,

A close personal friend of mine, a retired senior nurse and family friend since the early 90’s suggested that I recommence taking my blood pressure and measuring oxygen saturation, I listen to nurses as they are brilliant. I had to purchase a blood pressure unit in 2014 during ABVD chemotherapy and the Oxygen saturation unit clips onto your finger

Blood Pressure Monitor – mine is older than this one but they are excellent, measured from upper arm

Oxygen Saturation Unit – Bought this in Argos and it cost €24.50

For my age and physical fitness I always had a great blood pressure like 115/70 and a pulse rate of 75 My oxygen saturation levels were about 98% even after Chemotherapy

But I was more than surprised at the current results actually shocked. Over the past week I have been constantly high

High blood pressure, also called hypertension, is blood pressure that is higher than normal. Your blood pressure changes throughout the day based on your activities. Having blood pressure measures consistently above normal may result in a diagnosis of high blood pressure (or hypertension).

The higher your blood pressure levels, the more risk you have for other health problems, such as heart disease, heart attack, and stroke.

Your health care team can diagnose high blood pressure and make treatment decisions by reviewing your systolic and diastolic blood pressure levels and comparing them to levels found in certain guidelines.

The guidelines used to diagnose high blood pressure may differ from health care professional to health care professional:

• Some health care professionals diagnose patients with high blood pressure if their blood pressure is consistently 140/90 mm Hg or higher.² This limit is based on a guideline released in 2003, as seen in the table below.
• Other health care professionals diagnose patients with high blood pressure if their blood pressure is consistently 130/80 mm Hg or higher.¹ This limit is based on a guideline released in 2017, as seen in the table below.

I have been testing for 10 days 8 times a day as guided. I had to do this following my Stem Cell Transplant in 2017 and I had a copy of the log sheets to monitor. Out of over 80 test I only measured normal readings once. My blood pressure and pulse are reading all over Hypertensive Stage 1 and have recorded Stage 3 crisis 20 times – I even tested the unit on Anita to insure it was working correctly. This is extremely unusual for me and of great concern.

So on to Thursday 23^rd of September

First appointment is at 2pm in the X-Ray department  and 3 hours later I will meet the Oncologist.

The Scans went fine, slightly delayed but in and out within an hour.

Not bad for someone diagnosed as terminal in 2017

The following is not caused or part of or related to Cancer or Lymphoma. It is a side effect of Covid-19

We then start to discuss the VirScan blood test and X-ray

Within the last 18 months I have had Covid 19, confirming without doubt that this is what I had in April 2020.

It appears that Covid also damaged my immune system and since April 2020 I have had multiple chest infections but up to two recent pneumonia attacks

Pneumonia is swelling (inflammation) of the tissue in one or both lungs. It’s usually caused by a bacterial infection. It can also be caused by a virus, such as coronavirus (COVID-19).

But he has ruled out a second or recent Covid attack. It is a viral infection and currently in what he believes to be the middle of the infection. His words “this is dangerous” The attacks have left and are currently causing scaring to my right lung called Pulmonary fibrosis

Pulmonary fibrosis scars and thickens lung tissue. It impacts the connecting tissue in the lung and the alveoli (air sacs inside the lungs). The lung damage gradually gets worse over time. Hard, stiff lung tissues don’t expand as well as they should, making it harder to breathe.

I then produced my blood pressure logs for September. He studied them and said “this only confirms viral pneumonia, your lung is placing pressure on your heart and this is the result” I asked if the readings could relate to stress and he said “absolutely not”

This lovely gentleman has known me since 2014. He is the oncologist that originally diagnosed me. He has seen how well I can fight and my sheer determination to win. “Ian under normal circumstances I wouldn’t hesitate to admit you to ICU, but this is not a normal circumstance and your immune system is most like flattened. If I admit you I could expose you to further danger and I’m not prepared to do that. I need your assurance that you will rest up in bed for 5 days” he prescribed inhalers paracetamol steroids and strict instructions on rest. I explained that I was at the stage of signing for the sale of my house and he simply said ” don’t- I do not want you making financial decisions at this time” I didn’t want to argue with him so I agreed.

But the conclusion to the worry about blood pressure was settled. It was caused by pneumonia. Unfortunately I can’t write everything on this site and I’ll explain at the end of this article why.

Off home and straight to bed. The next day all hell broke loose. People misunderstood the reasons to withdraw the house from sale. For a day that should have been pressure free it was exactly the opposite. I actually can’t recall 1/2 of it, I was on medication but my blood pressure shot to a level I never imagined to the point that I had to remove the monitor. I switched from taking calls to actually sending messages. The calls started at 9:30 and only ended at 5pm. Saturday however was different. I told Anita on Friday night that if anyone tried twisting things again I’d tell them to fuck off. I rarely get like that but been told the day before that my life was in danger justifies it.

Saturday & today Sunday and my blood pressure has for the first time in a month returned to normal. Medication & rest have taken it to my normal average of 120/80 every read is good. I have to return for more blood test on Wednesday. But Monday & Tuesday are aimed at rest only.

I did mention above “Unfortunately I can’t write everything on this site” let me explain that. This little blog site was set up to help spread awareness to lymphoma. Since its creation in 2017 it is ranked within the top 5 Lymphoma awareness sites in the world. Currently we have 35,000 viewers. My aim from the start was to allow people to see the battles against Lymphoma in a clear, simple and positive way. There are unfortunately some readers who have absolutely no interest in this, their motive is self-centred and in reality they are stalkers properly the worst kind, what I call the scum of the earth. Their only wish is that I fail and they should realise at this stage I won’t. I have battled all my life, I have beaten terminal cancer twice, I’ve beaten Covid and multiple attacks of pneumonia. However these negative idiots still underestimate me. These sad excuses for people have known me for years but instead of lifting the phone and calling me they prefer to stalk this blog and spread false gossip & rumours. The sad part is that I now need to be careful what I post, I have about 6 drafts never published because of these idiots. I can’t block their IP addresses as this is a public forum. But karma is a wonderful thing.

But this blog is all about awareness and I am now 4 years in remission & cancer clear

Updated 1st of October 2021

Have to update this a little as some people have taken the part about stalking wrong. I have no issues at all with people reading these articles based on wanting genuinely to see how I’m doing or with interest in cancer therapy etc.

The stalking is about a specific number of business people in Dublin and if they continue stalking then I will do a “name and shame”.